Diagnosed Nov 29th 2019 with PSA 88 and mets to 3 bones i pelvic area, lymph nodes and 1 rib (via PSMA-pet/ct scan). Gleason 7 (4+3) in all 12 biopsies. Started Eligard + Zytiga and had during March 2020 RapidArc 20x with 3Gy per fraction to prostate + 13x with 3Gy per fraction to bone mets in pelvic area (controversial thing). PSMA pet/ct from June 2020 showed still some activity in caudal part of prostate, 2 of the radiated bone mets showed decreased activity and the 3rd no activity. 2 lymph nodes still showed activity (one of them decreased - they might have hit that during the radiation, but the one with unchanged activity is a little higher and has for sure not been hit.. so it makes sense).. The rib (costa 8 left, in the side, a little more to the front) had increased it's activity (only a shadow during initial PSMA-scan). My PSA has dereased steadily and is now 0.24.
My danish doctors do no see any meaning with further treatment of the mets. So I got a 2nd opinion from Finland (Docrates) and they say that more treatment should be done to the inguinal lymph nodes + the two possivie lymph nodes and rib. I am a little worried of possible side effects e.g. lymphedema in my legs. Here is what the finnish doctor says:
Treatment: Radiation therapy for inguinal lymph nodes, 15 x 2.5 Gy (e.g.) and those with positive PET-CT scan 15 x 3 Gy (e.g.). Change in rib should be treated with stereotactic RT dose e.g. 3 x 9 Gy,
Risk assessment:
The change in the rib is in the side, a little more to the front. Radiation can be targeted very closely to the target and there should be no danger to your lung capacity. The dose to the lung is not expected to be big. Radiation therapy to other areas e.g. spine can be done without any issues in the future.
Radiating the positive lymph nodes only is not a viable option as there are cancer cells in other locations in the lymph node chain that won't show positive at this stage in the PSMA-PET. There would be new metastases in the region later if we don't radiate this region now. I don't expect issues with your legs or lymph drainage. There are other lymph vessels in this region that will be used more after the radiation of inguinal area lymph nodes.
Radiating the prostate region with this additional dose is really not an issue. We will take into account the previous doses and plan the area so that it is as safe as possible for you. Also you should be aware that doses well over 100 Gy can be given to the prostate. we are not there yet.
SO... Anyone who have had something similar done and what do you think??? I am willing to take some risk as I am young and want to see my kids start in school etc... I have read about the SSPORT trial ascopost.com/News/59414 about this.. What do you think of this approach????